Earlier this week I listened as a man who had phoned in to a local radio show struggled to speak through his tears. His mother is dying in a Suffolk care home, yet he has been told he cannot see her until she is 48 hours from death.
She is yearning to see him, while he is overcome with grief at the knowledge that by the time he is ‘allowed’ to visit her, she will most likely be unconscious, unaware of his presence during her last moments.
It is just one example of the callous — and I believe unlawful — madness that has been unfolding for months in our care homes.
As co-founder of the dementia rights organisation John’s Campaign, I have been left agog at the absence of common sense and humanity in policies that have masqueraded as protection but which have so often seemed like punishment.
Nicci Gerrard and her father John on holiday in Sweden in the summer of 2013 – the year before he died
Risky
The Government’s official advice, released last week, holds that working-age care home residents can leave to visit their families at Christmas — but argues that this is too risky for the over-65s.
Many care homes therefore will not take the risk, and will do everything they can to prevent older residents from leaving to spend a few days with their family.
Last month, the whole country was stunned by the deeply distressing story of retired nurse Ylenia Angeli, 73, who was arrested for wheeling her dementia-suffering mother, Tina Thornborough, 97, out of her care home in East Yorkshire as a new lockdown was announced.
‘All I want is to be able to hold my mum and tell her I love her,’ said Ylenia — yet police nonetheless detained her.
No wonder we campaigners believe so firmly that the new Government guidance will therefore effectively ban older residents from leaving their care homes this holiday season — imprisoning a large swathe of society at a time when the yearning to be with loved ones is at its strongest, and for many of whom it will be their last Christmas.
Retired nurse Ylenia Angeli, 73, who was arrested for wheeling her dementia-suffering mother, Tina Thornborough, 97, out of her care home in East Yorkshire
Tina Thornborough, 97, in the car as her daughter Ylenia Angeli, 73, attempted to take her out of her care home in East Yorkshire as a new lockdown was announced
It is time for the courts to put a stop to it.
That is why, with my co-founder Julia Jones, I have had no choice but to take legal action against the Government under the Equality Act 2010, the Human Rights Act 1998 and the Care Act 2014.
These require care providers to take into account the personal needs of their residents. Treating all those aged over 65 in the same way, rather than as individuals, is against the law. Imagine the uproar if the term ‘over-65s’ were replaced with a particular religion or skin colour.
Not for the first time, the pandemic has revealed that some people are more equal than others, exposing both a massive fissure in our social care system and our failure to engage with the needs of those who are approaching the end of their lives.
I learned all this on a personal level years ago. Like so many, I found myself a member of a club no-one wants to join when my father John was diagnosed with dementia in 2004 at the age of 76.
At first, the deterioration of a highly competent, eccentric, mischievous, much-loved man was slow. As the years went by, we could see the darkness gathering, though for a time he lived a good life at home with my mother, walking by the river and tending the garden he loved.
Then, in 2013, an outbreak of ulcers on his leg saw him enter a hospital where, over a number of weeks, his condition deteriorated to such an extent that by the time I went to collect him five weeks later, he was barely recognisable: skeletal, immobile, inarticulate — little more than a ghost in a bed.
Health Secretary Matt Hancock seemed to weep with relief and exhaustion yesterday as he described the first vaccinations being rolled out
For as long as I live I will regret that we didn’t understand sooner what this prolonged stay would mean: that this visible, daily deterioration was not through lack of physical care, but lack of contact, after visitors to the hospital were banned amid an outbreak of norovirus.
The absence of his family reduced my father to a shadow of who he was. Nine months after he finally came out of hospital, we lost him for ever.
The realisation that my family’s experience was so horribly common inspired Julia and me to found our campaign fighting for vital rights of access in hospitals and care homes.
Our argument has always been simple: that however well intentioned the rules may be, subjecting the most vulnerable members of society — and those who love them — to blanket legislation is not only inhumane but unlawful.
Sadly, an even more terrible crisis, Covid-19, has condemned countless more care home residents to the same cruel and lonely fate I saw in my father all those years ago.
In 2020, dementia sufferers have been brutally separated from their families for months on end as care homes were effectively told to lock their doors and refuse all visitors.
It proved a catastrophic decision — tirelessly highlighted by the Mail — which has led to dementia patients dying in their thousands while their helpless loved ones could only look on in bewilderment.
Cruelties
One woman was told she could see her blind mother only through a window. A loving wife was forced to stop her twice-daily visits to her husband. When he plunged into a spiral of depression and stress that left him at times extremely agitated, calling her name time and again, the care home’s solution was not to send in the wife he grieved for, but an unfamiliar NHS worker.
It has been Kafkaesque: daily cruelties meted out by a frightened bureaucracy that appears to have forgotten its purpose.
Of course, our Government has faced a gargantuan challenge this year. Little wonder that Health Secretary Matt Hancock seemed to weep with relief and exhaustion yesterday as he described the first vaccinations being rolled out.
Nonetheless, Covid-19 is not the only threat to these people’s health. In a residential home, the average life expectancy is two years. In a nursing home, it’s 13 months.
Since the first lockdown in March, many older people have died before their time as a result of another epidemic: not a virus but sheer loneliness, as they ached for the touch of a loved one’s hand.
Mistrust
Last month, there seemed a breakthrough, as new guidance emerged stressing the need to balance the risk of Covid against other forms of damage.
Yet in many quarters — as the man whose mother is dying would testify — this guidance has been quietly ignored. Many care homes, nervous about Covid, are proving reluctant to show any flexibility at all.
They not only deprive their residents of their individual choices, but also show an ill-placed mistrust in anxious family members who will do anything to avoid taking risks with the people they love most in the world.
At their worst, the rules means no-one can go in, and no-one can get out. That sounds an awful lot like prison to me.
That is why Julia and I have no choice but to take our fight to the courts: to force the Government to reconsider this heavy-handed policy.
Our lawyers have sent a pre-action letter to the Department of Health and Social Care explaining why these bans on care home residents above a certain age visiting family and friends are unlawful.
This is the first step before formal legal proceedings are lodged at court, though we are hoping for a swift response within days and an immediate reversal of the policy.
Without this legal challenge, many thousands of people with dementia will be kept ‘safe’ purely so that they can die alone. And what kind of society would want to do that?
- Nicci Gerrard is an author and the co-founder of John’s Campaign